Meredith Carlson Daly: Welcome to Milestones, a podcast featuring research and insights from the Eunice Kennedy Shriver National Institute of Child Health and Human Development.
I am your host, Meredith Carlson Daly.
We’re speaking today with Dr. Caroline Signore, principal investigator of a new research project aimed at gathering information about pregnancy – directly from the source – pregnant women. Called PregSource®, this project uses a crowdsourcing approach to gain a comprehensive understanding of pregnancy, information that may help researchers improve maternal care.
Ms. Daly: Dr. Signore, thanks for joining us.
Dr. Caroline Signore: Thanks Meredith. My pleasure.
Ms. Daly: Can you start by telling us why we need a project like PregSource? What do you hope to learn?
Dr. Signore: So, you know in the research field, we know a lot about abnormal pregnancies. We study pregnancy problems, we know a lot about how to manage and treat these conditions, but we know relatively little about the everyday lived experience of a typical woman in modern times. And so, we thought PregSource was needed to help us fill this understanding gap and when we learn from women what their experiences are like, we think we’ll be able to better understand and conduct prenatal care and improve outcomes ultimately.
We want to learn things about typical weight gain during pregnancy; how do women sleep when they're pregnant? Does their sleep change when they're pregnant? We even want to know things about how their pregnancy is affecting their ability to work or attend school. What's their mood like while they're pregnant? Does it change over the course of pregnancy? Does it match typical patterns over the course of time? So, all of these questions and more, we’ll be able to answer with PregSource.
Ms. Daly: And obviously, Preg-Source. Pregnancy. The ‘source’ part is from ‘crowdsourcing.’ What exactly is that?
Dr. Signore: So, crowdsourcing is a means by which a large number of people are engaged in order to collect information, answer questions, address research gaps, usually through an online method. So, this new and emerging technology, we felt like was prime for one of our first forays as an institute into sort of digitally conducted research. And you know it takes advantage of what's known as the ‘quantified self’ so, people all around are using technology in order to monitor and improve their health. Just think about Fitbits, right? Everybody's interested in using technology in order to sort of keep track of themselves and see how they're progressing through healthy conditions or in illness.
Ms. Daly: So, this is not an App. It’s a digital.
Dr. Signore: It’s a website, but one which is tailored so that it will be viewable and usable and user-friendly on any platform. So, your desktop computer, your smartphone, your tablet, you'll be able to use PregSource on the go - on your smartphone - just as you would if you were at your desk.
Ms. Daly: So, I understand this was launched in November and you already have more than 300 women participating. How do you know when you have enough participants?
Dr. Signore: So, we've set an ambitious goal for ourselves. We would like to enroll 100,000 women over the course of years we expect. How many is enough? Not to get into boring statistical lessons here, but we do know that the larger a study is, usually the more quality the research contains and the better we can have confidence in the results.
Ms. Daly: What are the benefits, the challenges of this kind of an online research project?
Dr. Signore: So, we feel like there are a lot of benefits. One of them is what we've just been talking about: the ability in a very cost- effective way to enroll a large number of participants from any type of community in a single research project. So, our reach is certainly trans country, but international we believe as well, once the word sort of starts to get out, the way it does when the Internet is involved. Another great benefit is that we'll be able to have enrollments from people who may not otherwise typically participate in research all that much. Large research studies tend to be located near large population centers, large academic centers. With crowdsourcing on the Internet, we can enroll just as easily from a smartphone in the rural plains, as we can from New York City. So, that's another really important part for us to have women's voices from all different kinds of backgrounds included in this project.
Ms. Daly: Are there particular challenges then?
Dr. Signore: One of the things that we challenge ourselves to do always is design PregSource so that it's an inviting experience that women find user-friendly that they feel comfortable in. Something that makes them want to come back, because the key to PregSource and one of the unique features of it, is that we'll be asking women on a very frequent basis over time what their experiences are. So, we definitely want to set PregSource up with language that women can relate to and experience that makes them want to come back.
Ms. Daly: So, not too cumbersome?
Dr. Signore: Not too cumbersome. It's a constant struggle between how much we want to know and what the time frame of a busy pregnant woman will allow.
Ms. Daly: Yeah, so you’re wondering, what are the benefits for someone to enroll? Can they learn about their own pregnancy? Can they track their own weight like a FitBit kind of thing?
Dr. Signore : That's right. So, we knew it would be important to sort of speak to this use of technology for self-monitoring and so one of the key components of PregSource is what we call ‘trackers’ and these are questionnaires that are brief, but that we hope women will come back and answer almost every day. And they can enter their weight, they can enter how they slept last night, how their exercise levels are changing, how their mood is on any given day and those trackers would enable women to print out or graph out their data and examine it themselves or use it as a way to bring to their provider and say, ‘here's what's going on, let's have a conversation about this.’
Ms. Daly: You mentioned that there are a lot of benefits for women to participate in this. What are some of the questionnaires?
Dr. Signore: So, when women enroll in PregSource, they'll first be asked a number of questionnaires about their medical history, past obstetrical history, what medications they may have taken before they got pregnant. Once we know their due date, we’ll be able to send them questionnaires specific to each month of pregnancy. So, early on you may get asked about an ultrasound you might have had; later in pregnancy, how about prenatal testing, gestational diabetes testing, preparation for labor. So, there are gestational age-specific questionnaires that come every month.
But it doesn't end with delivery. We want to know about labor and delivery, but we'll continue offering questionnaires in the postpartum period for both mom and baby. We’re interested in how women recover from childbirth, how they adapt to early parenting and how babies doing. What's baby eating? How’s he or she sleeping? What we want women to do, especially during pregnancy, is come back as frequently as they can to enter data into our ‘What are your latest updates’ questionnaire. So, each time a woman comes back after registering, we'll say ‘what's new?’ Have you had a new medication? Has something changed? Have you felt a new symptom? And how is your mood today? What was your weight last time you were weighed?
And these are the data that we can enter into the trackers that will plot these data over time. Women can visualize their history of pregnancy and print it out if they want to - and bring it to their provider for consultation. But we're trying to get at things that nobody ever really takes the time to ask in your five-minute O.B. consultation appointment. What's your appetite like? Have you had any pain to speak of? Yep, all kinds of normal, typical, everyday pregnancy experiences, we're interested in gathering this information from women.
Ms. Daly: And there are other organizations as I understand that are helping to collaborate with this project, right?
Dr. Signore: Yes, we've been very pleased to have the support and the partnership from 20 or more organizations and these include other institutes at NIH, professional groups, advocacy groups, patient representative groups. So, we're really pleased that from the beginning, PregSource has been a concept and a project that lots of people have been excited about and have quite importantly contributed a great amount of intellectual content.
Ms. Daly: And does that mean that if I’m pregnant and I’m looking into participating, I could also get some, there’s a resource library, there’s information?
Dr. Signore: That's right, and so part of what I say is that PregSource’s name doesn’t just mean crowdsourcing, it means a resource for pregnant women. So, yes that's an important component of PregSource from all of our partners who have compiled vast amounts of reliable information about pregnancy. We've compiled a resource library, so women would be able to browse through that library, search it for topics of interest and get information that they can rely on about their pregnancy and any questions they have. And we feel like that's an important plus because there's so much information, and truth be told, misinformation about anything on the Internet these days. We feel like we are a trusted portal for women to get information they can rely on.
Ms. Daly: And again, this is information that is everyday experiences, that these are not the anomalies, the aberrations, the rare complications. And it also has to do with nursing and difficulties with breastfeeding, correct?
Dr. Signore: Absolutely. So PregSource doesn't just end in terms of its data collection with pregnancy. We want to ultimately follow women and their babies out to the age of three years. Right now, I have to say PregSource continues through three months postpartum, with plenty of questions and advice about breastfeeding, getting back to work, pumping breast milk, what is baby eating, how is baby sleeping and we plan to expand those questionnaires well into years after birth
Ms. Daly: And will the results ultimately be shared somewhere?
Dr. Signore: Right, so, PregSource has been designed and a key principle in its design has been to serve as a resource, not just for pregnant women, but also the research community. So, this dataset - ultimately PregSource would generate a large amount of data on the typical-lived experience of pregnancy. This dataset will be made available to researchers through Internet portal and they'll be able to query the data, ask research questions, conduct analyses and ultimately publish their results. So, yes, this is something that is meant to be shared and used widely, we hope by the research community, once we acquire enough data.
Ms. Daly: And again, just to be clear, all the information that is gathered through PregSource is anonymous?
Dr. Signore: Absolutely! And I'm glad that you brought that up. Yes, no identifying information will ever be shared with either other participants or with researchers who request and gain access to the data. So, we would only share de-identified data is what we call it.
Ms. Daly: And I'm glad you clarified that that the ‘Source’ of PregSource is not just crowdsourcing, but it also is a resource, because there's quite a bit of information that you can mine.
Dr. Signore: That's right, I mean we want this project to not only serve research interests, but also women's interests and we want it to be something they feel good about that they will use for their own benefit and that they would recommend, we hope to their friends
Ms. Daly: I’ve been speaking with Dr. Caroline Signore who is leading PregSource, a research project that collects information about pregnancy directly from pregnant women.
Thanks for listening to another episode of Milestones.
I’m your host Meredith Carlson Daly.
PregSource® is a registered trademark of HHS.